In 2005 while on vacation, I was fine for the first 3 days. When I woke up on the 4th day I couldn't get my rings off. I couldn't stand on my feet. My ankles were so swollen as were my feet. My hands looked like someone stuck a needle in them and blew them UP! I put 15lbs of fluid on in 48 hours. I'm a very thin woman. I was 57 when this happened. Although my medical history reads like fiction, it's all true. Fortunately, everything I've had was backed up with lab results, xrays, scans etc. However, I would give anything in the world to not have any of the things I do, the fact that they are "visible" to treating physicians makes it much easier for me! I've had 7 back surgeries and I'm fused from L3 to S1. L2 had a laminectomy, I had an 11mm kidney stone that was removed with Lithotripsy. I have severe full body edema now. No one can figure out why. I have had 2 very detailed cardiac workups and although I have mitral valve regurgitation, and P.A.T., there isn't any congestive heart failure or any other reason for this fluid retention. I wasn't bit by anything on vacation to cause this edema. And since it's 2008 now, if something like that had happened it surely would have gone away by now. When I had this onset of edema, I had a rash on both legs that also just appeared that morning. They were from the knees down on both legs. It was a brownish/reddish rash but only lasted 2 days. Then it disappeared. However, this fluid retention hasn't disappeared. In fact it's gotten worse. My primary care doctor sent me first to the cardiologist, and that dr. sent me to a nephrologist. That doctor said I had Lupus. He said the double stranded DNA test came back at 169 and the normal high was 39. But my primary care doctor ran further more extensive tests and they all came back as normal. However, I was sent to a rheumatologist just in case. I sat in that dr.'s office for 2 hours waiting to be seen. I asked the receptionist if the dr. had an emergency. She said that it was always like this. I said "I've had numerous back surgeries and I can't sit 2 hours and wait for anyone!" In the meantime, while waiting, I noticed a gallary of pictures on this dr.'s wall. They looked like graduation pictures. Something like what a family would have hanging in their house. I looked closely at them and it had their names, dates of birth, and the day they SUCCUMED to LUPUS!!! I made my husband look at them because I couldn't believe this doctor was actually hanging pictures of his patients that had died due to the very disease they were seeing him for!!! It was then I decided I wouldn't be seeing him. However, right then I was called back. When he came in he was baffled as to why I didn't look the way my medical history read! I found myself defending the fact that I tried to not let me look on the outside how I felt on the inside. We obviously didn't get along. I also was seeing a Pain Specialist who had diagnosed me with RSD. I also have Arachnoiditis that was diagnosed my MRI. I also had an EMG and was found to have severe carpal tunnel in my right wrist and De Quervains syndrome in my left hand/wrist. I had surgery for this de quervains syndrome and because of how painful that was, there is no way I'm having another surgery on my wrist!! When I wake in the morning is the worst time of the day. My feet are burning, swelling, and just to stand on them causes such pain. My hands always tingle....feel like they are "waking up" but it's very painful. I can't wear any of my rings anymore due to this edema. I've always been very thin, and even now, no one can believe me when I say what I weigh. My doctor keeps telling me not to worry about what the scale says since it's all water. That doesn't matter to me. I DO care what the scale says, I DO care as to why I'm in so much pain, and I want this fluid to go away!! I'm on Lasix everyday. I had been on Bumex, 3 in the morning....and all the fluid went away...for one week. Then it all came back and then some. I've been tested for cortisol levels, diabetes, etc. Everything comes back normal. It's driving me crazy. Now they found a 7mm "lesion" in the middle of my liver and I will be retested in 10 weeks regarding that. Also my common bile duct is dilated and I'm supposed to have an ERCP to find out why. My doctor knows something is wrong but not one doctor can figure this out. I had my gall bladder out because it wasn't functioning and ended up with a septic infection from the surgery! At times I just want to give it all up. But then I see how much my family loves and needs me and would crumble if anything happened to me. Living with pain that is so severe that being on high doses of Dilaudid daily barely helps isn't how I wanted to live my life. Do you know if the RSD could be why I have this edema? I know it can cause fluid retention, but the pain in my feet and the swelling in my toes ankles, and basically my legs is just more than I can bare!! I need someone to help me and everyone I've seen just scratches their heads saying that they can see the edema, all you need to do is push your finger into my ankles and the indentation remains....they run test after test and except for the fact my organs seem DEHYDRATED, they have no answer as to why my vascular system is leaking into my tissues. Is there any possible thing you have to add to this strange disease that I could take to my doctor and ask him to check it out? I honestly, REALLY need some help. I do have a question though. I've only had the regular fasting glucose run on me. I've wondered if they should do the type of glucose testing that they do with pregnant women. I was diagnosed years ago with Polycystic Ovarian Syndrome (PCOS) however after having peritonitis, they did a total hysterectomy on me including the removal of my ovaries. I thought that once all those organs were gone the PCOS would be gone. But after talking to PCOS specialist they say that since it's a Pituitary/Adrenal gland problem, that I could still have problems with it. That's why I wondered if I should have this more detailed glucuse test run. I have a niece with Juvenile diabetes. My grandfather on my father's side had diabetes. My grandmother on my mother's side had Hypoglycemia. We have diabetes throughout our family and when I read up on it, I see myself in their literature at times......especially this burning, tingling, swelling, ankle feet problem. I wear TED stockings all the time to try to help the swelling and pain in my legs from the knees down. There has to be a reason for this. And I'm sure it's right in front of our noses but I think it's such an obvious thing that no one is paying attention to it! PLEASE, PLEASE reply
Sincerely,
Lil plum